Posted By Posting
Oct 25, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper's GI appt
WOW! It went better than expected. It was so so long over due. I could kick myself for not demanding it sooner. I know I would have for sure if we had not been seeing the pulmo regularly, but still regret waiting so long. The clinic was so nice. They brought him back, measured and took a naked weight, and then the dr was w/ us very quickly. He weighed 18lbs 1oz which puts him right at the 5%, which was fine by me. They has a stool chart, which made me realize how constipated he is most of the time. The dr went over a complete history w/ us. He was concerned about the large dose of prevacid (30mg) for such an extended period of time. I told him how we were on 10 doses, 4 different meds a day at one point, and still refluxing and he agreed that was too much. He talked a lot about the laryngeal malacia and how that can contribute to these issues. I really appreciated that he took everything into consideration. He said first he wants to do an EGD and pH impedance probe off meds. He said that he should not be having that much acid on such a dose of meds, so it is time to see if there is something else, possibly a EGID. I am really glad we are checking for damage and eos. b/c I think it is time. We will have the procedure on Nov 19. He will need to go off prevacid 5 days before and until the he has dropped him down to 15mg a day. He has been on this dose for 2 days now, and he coughed/choked a lot today.I don't know if it has anything to do with the med change or not. He gave him carafate until the day before the tests and he also gave him miralax to help with the stools. Another thing he noticed was how Cooper downed his cup of juice/water while we were there. I told heim he would drink all day if I let him. I asked if it could be b/c his throat burned from the acid. He said that on the dose of prevacid he is on the acid should be controlled and if not, that is concerning. He said he was also filling his tummy with water vs. cals when he drinks, so it would be best to offer him elecare in his cup instead. Cooper still nurses quite often, but he enjoys the cup or a bottle from time to time, so I think we will try this. The extra cals will be good for him, especially since he is becoming so busy. He said we would make some more decisions about meds after he gets a complete workup. I feel really good about all of this. I am at peace with pretty much of it. The one thing he said that was a little disheartening is that if he is still really struggling and requiring a high dose of med to control the reflux, then he might consider a fundo. Not that it is the first time we have heard this though. But, I do feel that a lot of his issues are food related. This is probably the best I have felt since we started this whole ordeal when Cooper was a mere 5 days old. Now he is a toddler, not much of a baby! I feel like we are finally going to have a solid answer and be moving in the right direction!
Oct 26, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I'm so happy for your good experience! It sounds like you are finally on track to move forward in the best direction for Cooper. Our first GI appt is on Friday, and your experience gives me hope...
Oct 26, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
I agree its so important to be at peace with the docs approach to treatment. Glad tohear it went well :)
Oct 26, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
I feel such a feeling of relief for you. Not that you still won't have a lot to deal with but it sounds like you have finally found the right doctor to be working with you and Cooper.
Oct 26, 2008
stickybean
wahoo!!!!!!!! Great that is went sooo well. That is great news!

your siggy is too cute! He is a handsome little guy!

Oct 26, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am so glad you have such a good GI DR and that all of your questions were answered. Miss you!! ((HUGS))
Oct 27, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Sounds like your GI has a great plan. What more can we ask for! Cooper is so cute!
Oct 27, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
I'm so glad to hear this! Please keep us updated, I'll be praying for the 19th!
Oct 27, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
YAY!!! i'm so glad that the appointment went well! FINALLY, (hopefully) you will get some answers. I know the testing is not fun on the baby or mommy, but I hope that it provides you with a way to better treat his condition. Thank you for the update. -Sarah
Check with your
doctor first!